Conference Agenda

Evaluation plays a pivotal role in transdisciplinary (TD) research, often discussed during funding stages or when assessing project impacts. A few studies delve into the participant perspective when examining the quality of transdisciplinarity. Our

work contributes to this area of assessment. Rather than providing a definitive definition of transdisciplinarity, we developed a questionnaire to evaluate a set of TD principles within a specific TD initiative. We collected insights from 100 individuals

out of a pool of 200 participants engaged in a TD initiative since 2016. Given the long-term nature of the case study, our sample included both frequent and occasional participants. Using non-parametric statistical, we concluded that frequent

participants express higher satisfaction with their involvement, identify more outcomes stemming from their participation, and assign greater importance to TD principles. These findings highlight the significant impact of investing in long-term

TD initiatives. Additionally, our questionnaires featured open-ended questions to capture participants’ individual definition of the initiative, along with their perceived benefits and drawbacks. Through content analysis, we identified two distinct

discourses: positivism and postpositivism. The positivist discourse predominantly features male participants over 60 years of age, primarily from the research community. These participants express lower satisfaction with their participation and assign less value to TD principles. We found no association between positivism/postpositivism and participation frequency (i.e., frequent/casual). This suggests that these two discourses can coexist and interact within a TD environment. Nevertheless, the perceived value of TD is not uniform across these groups, indicating that TD may not align with everyone’s objectives, even in complex contexts where the approach is considered essential.

Patient participation in health research is growing, and the experiential knowledge of patients helps to shed light on their perspectives and preferences. In the context of cancer, challenges they face extend beyond pathology and treatment to encompass physical, psychological, social, and spiritual needs. The improvement of treatments and life expectancy brings new challenges similar to chronic diseases. It is therefore of societal interest to tackle the quality of life aspects throughout the cancer journey of some 18 million new patients per year. In this context, the overall objective of the research project "Symphony-of-Us" is to question what matters to patients, to conceptualize and improve the Patient Value in oncology research. Taking a transdisciplinary approach, the "Symphony-of-Us" project aims to promote cancer patient’s participation at all stages of research.

We have set up and trained a team of patient-researchers through a methodological process allowing the involvement of the people concerned and their experiential knowledge mobilization in quality of life-related research in oncology. The objective of this process was threefold: 1) build a transdisciplinary research team and ensure its member’s true engagement; 2) build a common language and a shared knowledge base necessary for the implementation of participatory research; 3) launch a participatory approach based on a relationship of mutual trust.

This process was built over +/- 3-months including a recruitment phase combining information, self-selection, and co-construction of the patient-researcher group, a training phase, and an evaluation phase. The training phase aims at providing the necessary tools to patient-researchers to acquire theoretical, practical and legitimacy skills to allow their involvement at all stages of research. The training is built around several modules addressing (1) theoretical aspects of research, the challenges of research on quality of life in oncology; and the transdisciplinary approach; and (2) practical aspects of research applied to the Symphony-of-Us project (co-construction of interview guides, survey forms and conduction of semi-structured interviews). The last part of the process will be devoted to a collective reflection on the research project and its methodological process.

We will present the different stages of building the team of co-researchers and the training as well as the first results of the implementation of this personalized learning process and its ongoing evaluation. We will also provide feedback on the commencement of this transdisciplinary research team.

Participatory research offers new perspectives by combining expert and experiential knowledge, which requires specific modes of organization. Co-research can present many challenges and requires a constant questioning of one's practices and personal posture. There are practical, ethical, and emotional issues involved in the participation of patients. It is therefore necessary to build a solid, committed and mutually trusting team by promoting a reflexive capacity that allows adjustment of the scientific approach and project design. The process presented here is the first step of the Symphony-of-Us project. By exploring the possibility of incorporating patient’s perspectives and multiple stakeholder knowledge in the research questions to define the barriers and levers, we aim at co-building possible future outlines while improving Patient Value in oncology research.

Challenge

Translational medicine (TM) is an interdisciplinary branch of biomedicine that bridges the gap between (fundamental) biomedical research and patients from bench-to-bedside1,2. The goal of TM is to improve global health by combining disciplines, resources, expertise, and techniques in biomedicine. Fundamental TM skills include interdisciplinary collaboration, communication, critical thinking, and creative problem-solving (so-called 4C’s)1,2. TM is currently limited in undergraduate (bio)medical education programs -which are mainly designed towards educating future professionals- with limited opportunities for collaboration between disciplines. In this study, we aimed to develop a novel interdisciplinary challenge-based educational concept, grounded in the theoretical framework of research-based education, to implement TM in undergraduate (bio)medical education.

Methods

Medicine and biomedical students were introduced to an authentic clinical problem through an interdisciplinary session with patients, medical doctors, scientists and other (extra-)academic stakeholders. Next, students collaborated in mixed groups to design unique laboratory-based research proposals addressing this problem. Finally, the best proposal was executed hands-on by mixed student teams in a consecutive interdisciplinary laboratory course. For this, we founded the Bachelor Research Hub, a dedicated wet laboratory within the UMC Utrecht where students can do biomedical research together with researchers, medical doctors, and patients. Written questionnaires and focus groups were used to evaluate the efficacy of the educational concept on student perception on learning, especially regarding the 4C’s and student motivation.

Results

Evaluation results revealed that students found that they developed 4C skills and acquired a 4C mindset. Working on an authentic patient case positively contributed to communication, critical thinking and creative problem-solving skills. Working in an interdisciplinary setting helped students to develop collaboration and communication skills. Furthermore, students were motivated by (i) the relevance of their work that made them feel taken seriously and competent, (ii) the patient involvement that highlighted the societal relevance of their work, and (iii) the acquisition of a realistic view of science.

Discussion

We have showcased a widely applicable challenge-based undergraduate (laboratory) concept fostering TM in education that positively stimulates the development of 4C skills. Students find working on an authentic patient case and interdisciplinary working motivating because they feel competent, they feel taken seriously, and they understand the social relevance better. Additionally, in the laboratory course, medical students were motivated by the technical skills and biomedical knowledge of biomedical students, while biomedical students valued the clinical perspective of the medicine students. The concept allows further upscaling towards a Student Research HUB network with larger variety of disciplines and students.

References

1. Bovenschen N, et al. Towards Bachelor Research Hub networks to foster transdisciplinary challenge-based education in Translational Medicine | Nature Portfolio Bioengineering Community. (2021)

https://bioengineeringcommunity.nature.com/posts/towards-bachelor-research-hub-networks-to-foster-transdisciplinary-challenge-based-education-in-translational-medicine

2. Drost RH, et al. How a four-year-old boy connects healthcare, biomedical research and undergraduate education. Nat Biotechnol. 2019;37(9):1092‐1095. doi:10.1038/s41587-019-0245-5

Background: Hypertensive Disorders of Pregnancy (HDP) account for up to 50% of Ghana’s disproportionally high maternal mortality rate. Research on HDP in Ghana is of vital importance to improve the quality of care for women suffering from HDP and their

newborns. Historically, the direction of research has largely been determined by

stakeholders with indirect experience with HDP. Stakeholders with lived experience (patients with/survivors of HDP, their carers and healthcare professionals) are insufficiently consulted, even though their first-hand insights are invaluable for the establishment of a conscientious research agenda. This problem is addressed by the development of Priority Setting Partnerships (PSPs), in which patients, carers and clinicians jointly identify and prioritize needs for future research.

Aim: to identify and prioritize topics for future research on the management of HDP in

Ghana based on the opinions of stakeholders, especially those of patients, their carers and healthcare professionals.

Methods: The Severe Preeclampsia adverse Outcome Triage (SPOT) Consortium and the NGO Action on Preeclampsia (APEC) Ghana initiated this transdisciplinary collaborative project, which is taking place from February until August 2024. The process largely follows the James Lind Alliance method for PSPs, however tailored to the Ghanaian context. The Research for Health Justice Ethical Toolkit is furthermore used throughout the process as a reflective aid to identify and apply the necessary ethical considerations. An Advisory Committee, consisting of thirteen survivors, their carers and relatives, community representatives, healthcare professionals and a policy maker, holds the decisive power throughout the project and oversees the operations team. A first survey is developed and spread to identify unknowns and concerns of relevant stakeholders regarding HDP. The responses are summarized and reformulated and checked against existing evidence, and a second survey round follows to establish an interim priority list from these responses. In a final prioritization workshop, stakeholders discuss and agree on the final top 10 research priorities. The project is disseminated through the networks of all stakeholders involved and an open access publication. Throughout the process, the PSP project team engages with stakeholders with the potential to support the translation of the top 10 priorities into actual research projects.

Expected results and impact: through ongoing extensive dissemination and support of PSP partners, we expect translation of the top 10 priority list into research projects, preferably led by Ghanaian research teams. We also plan to share our lessons learned throughout the PSP process, which can inform future PSPs in similar contexts. Thereby, we hope to stimulate research groups in other sub-Saharan African or lower-middle income countries to use the PSP method as an approach for the development of research agendas.